Tag Archives: Steroid Dependancy

As some of you may be aware, I have seen a couple of endocrinologists to date for my adrenal insufficiency and I have not connected with either of them. Some may call it ‘Doctor Shopping’, some may say that it is me with the problem because shock horror, every doctor is the right doctor aren’t they and how dare we question them?

Well the answer to that is no, and not all endocrinologists are equal when it comes to adrenal insufficiency – or any endocrine problem for that matter. Because at the end of the day, medical knowledge on any specialty does not begin and end at medical school. It extends to continuing professional development, an open mind and a belief that not all patients fit the standard.

So no, I do not call it ‘Doctor Shopping’, I call it exercising the right to a medical consultation while being treated with understanding, belief and respect.

My Journey

If you have read my previous blogs you will know that my journey with adrenal insufficiency has been a bumpy one and one that was frequently dipping to the area of denial and an intense love-hate relationship with my steroids. If you haven’t read these blogs, here is the link if you fancy reading them. Mind you, they don’t make for exciting reading and you could end up sobbing into your coffee and eating custard creams.

I have had years (and I mean almost six years) of attempts to wean, 1mg every month, 1mg every 2 months, 0.5mg every month, every two months and more recently 0.5mgs every three months. It has been tiring, draining and more to the point it has taken its toll on me mentally as you can probably imagine.

Adrenal insufficiency can give some very specific symptoms when it comes to low cortisol. Symptoms that many doctors disregard because they may not have been listed or studies done to prove them. Now that is fair enough, one can only go on what knowledge one has acquired but then again, the patient should not be dismissed when they report what is happening to them either.

I recall telling one doctor how I was (still am) highly sensitive to bright lights and loud noises and smells. The smell of coffee beans is overpowering to me and everything that I smell is exaggerated. I told him how I get an ache in the tops of my thighs (usually when I would try and reduce my steroids), I told him how I was easily startled with sudden loud noises if they woke me up at night.

‘Those symptoms are not caused by adrenal insufficiency’, was his somewhat blunt response.

It was only when I confided with some people in a support group that I realised that I was not the only one to be hypersensitive to things, or get that awful ache in the tops of my thighs. More to the point, I was not the only one that had my symptoms disregarded and been made to feel like an idiot by the very professionals that were meant to assist me.

Another specialist suggested in the nicest possible way that perhaps I took the odd 4mgs of hydrocortisone for ‘euphoria’ and no, I am not joking about that either. Believe me on this one, if I wanted euphoria then my book reaching the bestseller list on Amazon would do that, or perhaps a ticket to Namibia or even meeting the singer Usher (I love Usher, like proper fan-girl crush) – but 4mgs of hydrocortisone for shits and giggles? I don’t think so.

Promising myself that I would never see another Endocrinologist again, I continued to try and manage my condition while holding down a full time job and waking up at 5am each and every morning thinking that I had gone to Hell in a basket.

What makes this whole thing even harder to deal with is the fact that there is no end in sight. No respite from symptoms, no patient education and support, no protocols in place and no clear cut treatment pathway to assist me other than instructions of taking my preds once a day and everything should be fine (once a day would be fabulous but I have to split my doses into four times a day as they only last a few hours).

So what now?

A few months back I was given a name of a specialist who is reportedly very good. I sat on that info for a couple of months, wondering if I could muster the courage and energy to make contact – you can’t blame me for being cautious.

But as the old saying goes ‘You have to kiss a lot of frogs before you find your Prince’ – not that I am planning on kissing any endocrinologists of course. I will just settle for an open minded, compassionate doctor, a treatment plan and a way of making my prednisone doses last longer than three hours.

It’s been ages since I last blogged for a variety of reasons. I have been working on my book which will be out for publication next month.

Plus I have been feeling utter rubbish with my health and adrenal insufficiency. Honestly, if I thought having Sjogrens was hard then I was sadly mistaken because having your adrenal glands behave so badly is ten times worse.

It was pretty much decided last year that my adrenal insufficiency was for life and not just for Christmas and after a couple of years of trying to wean off by just 0.5mg of preds every 3 months and feeling like I was going to die – twice, that it was time to call it quits.

Anyway, that is where I am at the moment, living with this horrible imposter that makes me feel rubbish for most of my day and live for my next dose of steroids. There has to be a better way, another way or surely this is all a big fat mistake – right? Who knows, not me that’s for sure. But here is my daily diary of the thoughts that frequent my head every day without fail.

My 5mgs of preds used to last all day, but now they don’t – I have to split them up and despite what you might have read or heard, some of us absorb drugs quicker than others or just have absorption problems.

5am – Briefly aware of my hands and feet having an altered sensation, the small bones in my hands and feet hurt, the tops of my thighs hurt. Am I awake? No I am not, I am trying to hang on to the nice dream that my adrenal symptoms are dragging me away from. I refuse to wake because life doesn’t hurt so much when you are asleep. Yes it would be prudent to wake and take my steroids but no, I won’t – let me sleep please and take your dizziness and nausea with you.

7am – I am awake, the alarm has told me it is time to get up, except that I can’t. I feel really dizzy and want to vomit and the tops of my thighs hurt with a period pain type pain. Sometimes the pain is in my lower back as well and it is sharp, but not always.

I sit up and take my 2mgs of preds and then lie back down until 7.30am, not because the steroids have worked because they haven’t by then as they take at least an hour, but because I simply cannot get up. I lie in bed and wait until I feel a bit better.

I briefly flirt with the idea of going to the gym but my leg muscles feel too weak and as I can only just get in and out of the car early in the morning, I think the leg press is out of action, don’t you?

7.30am – I am up, go me! Top Queen for getting out of bed like a champion when I feel so shit, I deserve a medal.

9am – I feel human – almost and enjoy my breakfast, actually I feel pretty good and ‘normal’ whatever that is. I have a confident walk, I can have a laugh and everything is just perfect – until someone decides to put something in the microwave that smells too strong and then my stomach wants to punish me and make me vomit.

But that is OK, I still feel normal like everyone else – except for the cooking smells, but I can ignore them.

10am – This is good, perhaps I don’t need these steroids – think I can ask the doctor to wean me off them. I hate steroids, I hate them more than Celine Dion, I hate them more than celery – I just hate them. Yes that is what I will do, I will ask my doctor to wean me off, I don’t need them and if I am strong then I can get off them – easy!

10.30am – I have been super busy, my face feels like it is being squished in a vice, my head is hurting and I have brain fog. I feel sick and if anyone puts curry in that microwave then I will cry or vomit or even both – a bit like the Exorcist.

And while you are at it, you can turn those lights out and stop talking and laughing because quite frankly it is too noisy and too bright. My muscles are starting to ache and it hurts to get off the chair. But I reckon I can still ask my doctor to wean me off the preds, even though I know I have tried before, this time it will be different.

I feel sick, who in the name of fluffy kittens is heating food up – any food, stop it and stop it right now! Does anyone have any salt or pickles? I will sell my soul for salty goodness, come on, someone must have salty goodness and no, I do not care about my blood pressure.

11am – It’s steroid time! Give me my 1mg of preds and give it to me right now. Come to Samantha you beautiful pretty little white tablet, I love you so much, how could I have ever thought of talking about you so badly and asking my doctor to wean me off you. Do you forgive me Mr Prednisone? Get.In.My.Belly!

12noon – Come on preds, do your magic and I will love you forever.

1pm – What a beautiful day, let’s go for a walk – my goodness I can march like a champ, check me out, I am normal! Who needs the preds, surely not me because I feel normal! Go me, check me out walking like a healthy thing looking all normal and showing off. Adrenal glands, you don’t rule me, I rule you so take that and stuff it with garlic.

2.30pm – I am dying, no really I am. I am going to sleep so don’t try to stop me. Stop squishing my facial muscles, it is not funny. Shut up everyone, just shut up – don’t eat smelly food, stop teasing me with your salt and just stop everything. Did I say that I wanted to wean off the preds? Really? Are you sure? You are such a liar.

3pm – Hello Mr Prednisone, get in my belly and do your magic, how has your day been? No, I never said wean off, we are mates aren’t we?

3.30pm – Please work quickly, I am nodding off and dribbling down my own cheeks and I feel sick.

5pm – Feeling good sister! I think I can conquer the world, I am wide awake – this is brilliant. Check me out walking up and down those stairs, even when I don’t need to – purely to prove that I can. Actually, Preds – I don’t need you, I am going to ask my doctor to wean me off you because I don’t do dependency my friend so please go and find someone else to invade.

I am going to walk my dogs, work on my book, hug my husband, have a shower, make some tea and feel thankful for my health.

6pm – Don’t mind me, I am just going to fall in the bath, we can walk the dogs and watch a DVD later – I am going to ask the doctor to wean me off the preds. My husband who has been patiently waiting at home for me, nods knowingly – knowing that none of it will happen.

After a soak in the bath, I sit on the edge of the bath because my muscles are refusing to let me stand up. Perhaps I will work on the book tomorrow and just watch a DVD with my husband.

7pm – What a brilliant DVD, I can’t stop yawning this compulsive desire to yawn is taking over. Sorry I haven’t seen you today, haven’t seen the dogs – you are all so lovely and I love you so much, maybe tomorrow?

11pm – Has the DVD finished? How can that be, I only stopped for a snooze. My dogs look at me accusingly and Gordon the cat looks mortally wounded while my husband has resigned himself to that is just how it is. As for me, I feel crap and all I can think about is yes, you have guessed it – steroids.

Accusing looks from my pets

(Photography by Sam Rose)

I take my last 1mg of preds and go to bed. I promise myself that when I see my doctor, I will ask to wean off. Steroid dependency is something that happens to someone else and I am too strong to let it happen to me.

Until I realise that it HAS happened to me and how strong I must be for living this crap day in and day out. In fact, I am going to award myself the title of ‘Champion’ just to make me feel better.

Steroids – our only defense against adrenal insufficiency and the drug we love to hate, The real strength comes from acceptance and learning to cope with the condition which is something that I am still coming to grips with.

I am getting there though, slowly but surely.

Talking of which, I have 90 minutes until my last dose, but whose counting……

It’s been a long time since I last blogged about my adrenal insufficiency and the last time that I did, I explained how my adrenals had made a slight improvement on my cortisol production with my morning blood cortisol being normal but my Synacthen test still being inadequate.

Like a drowning woman offered a lifeline, I took this news as a sign that I would recover and get off the steroids forever despite the little sensible voice inside of me whispering ‘Yeah right Samantha’, a voice that I told to shut up but one that like my Mother, was right all along – about everything.

*Well actually my Mum wasn’t always right, I do recall buying a knitted jumper-dress in the 80s and looked diabolical with my skinny legs looking like bits of string knotted at the knees, Mum said I ‘looked like a model’, she lied – I looked like a cauliflower with arms and legs wearing a jumper dress. But that’s OK, I forgive her*

So what has happened since I last posted on this subject? Well I had managed to get down to 3mgs of prednisone and have been for just under a year by reducing half a tablet every three months. Several (failed) attempts to get down to 2.5mgs were made and even going down by just 1/4 tablet, each attempt resulting in me bumping back up to 3mgs with my invisible tail between my legs while begging my body for forgiveness until I felt marginally better and would then try it again expecting a different result.

I cannot emphasize enough just how unpleasant it is to get below 5mgs of prednisone. The pain is intense, the tiredness is extreme, the brain fog is awful and whilst I would like to put it down to simple ‘rebound effects’ from steroid withdrawal, it is certainly not (in my case) rebound and there is nothing simple about it and trust me, I know the difference.

Living/existing on 3mgs was bad enough but I had been warned that ‘feeling rubbish’ might just be the price to pay for the reduction, but each and every attempt at reducing was having horrible effects on my body which had me wondering what kind of long-term damage I was doing to myself.

Admittedly I had been driving the ‘I must come off steroids’ train and pestering my doctors to take me off them. Each exasperated sigh would be followed with ‘Go down by 0.5mg and see me in three months’, I would leave the room with faux happiness and telling everyone ‘I am coming off those steroids!’ I would also last a couple of weeks, think that I had gone to hell in a basket and put them back up.

My Turning Point

‘How long have you been trying to get off 5mgs?’ I was asked one day.

Frowning in thought, I replied ‘About 3 years – maybe more’.

This person laughed and said ‘Are you not tired of it, the feeling crap and exhausted and all the symptoms that go with it? That’s a long time to feel shit’

Sounds of the penny dropping, of everything falling in to place, the feeling of embarrassment about how daft I had been for all these years. But most of all, it was the stark realization that I would not have treated a friend the way in which I had treated myself – both mentally and physically.

I remember taking a deep breath and nodding a few times ‘Yes, yes it is and yes I am tired of it’ I replied simply and that my friends, was my turning point and this happened about the second week in December (2016).

Having ignored my adrenal insufficiency for so long in the naive hope that it would go away, I would join support groups on Facebook and then delete my posts and remove myself from the groups because I believed that I did not belong there and that I would get better.

But now I had finally realized that the only way to move forward with this disease was to learn about it, get a plan of action and accept it. I didn’t have to like it but it was here to stay.

Because waking up feeling unwell, nauseous, dizzy, struggling with feelings of low blood sugar, complete inability to deal with any kind of stress, struggling to hold down a 40 hour week job with an hour a day traveling was hard enough let alone pretending it wasn’t happening.

I had to face up to it in order to accept it and it would be in my best interests to learn about what was happening to me because ultimately knowledge is power and I needed to learn how to manage my adrenal insufficiency because it sure wasn’t going anywhere.

What happened next?

I joined another support group – no really I did!

Recently I came across a UK-based support group and although I am in Australia, I found it to be most helpful with the answers to pretty much all of my questions. Feeling slightly embarrassed, I quickly paid my membership fee online before I could change my mind.

I printed out some of the information and the treatment/protocol guidelines, read it all several times and then took it to my specialist so she could see where I was getting my information from and that the literature was from a credible source (Dr Google is shit by the way, do not confuse Dr Google with a medical degree).

My specialist looked pretty relieved when I asked her if I could not only put my steroids up but could I also please try the Circadian Rhythm dosing that I had seen as shown in an article on the support group (written by an Endocrinologist). She knew that I had finally ‘got there’ with my acceptance of this disease and was pleased that I had joined a support group.

I can’t imagine how annoying I must have been requesting repeat Synacthen tests and pushing to wean off the steroids at a huge cost to my health. It was a clear case of doing the same actions on repeat and expecting a different outcome which by my own admission, must have been bloody frustrating to watch.

The specialist was happy with the information that I had printed out and even gave me an emergency letter to carry around with me in case I needed to go to hospital. Adrenal insufficiency be it primary or secondary is a disease that is misunderstood and I have heard of medical staff not even recognizing it when patients present in ED so the letter with adrenal crisis protocols can be a lifesaver.

I am now back up to 5mgs of preds divided into three doses. Now I know that some doctors believe prednisone should last 24 hours but it certainly doesn’t with me and I have split it up in to three times a day with my last dose being at 11pm.

I do appear to be metabolizing it very quickly and if I am resting up at home, then I can tolerate the feeling crappy between my afternoon and bedtime doses because I am not going anywhere and can afford to crash on the sofa and sob into my tea and feel sorry for myself. (The rest of the dosages can’t be changed either – believe me I have tried and I have tried HC as well in the early days, my body ate that up like a kid in a sweet shop)

The real test will be a busy day at work and ultimately a hectic working week including the journey to and from the office. Hot temperatures also affect me as does vigorous exercise, last week in Yoga I had to lie down because I felt dizzy trying to do the ‘Downward Dog’ but that is another story.

Stuff that I have learned along the way

What I have noticed is that if I am not busy then I notice the symptoms more which is both a good and a bad thing. It is a bad thing because you focus on it and feel worse for it but it is also a good thing because you get to know what makes you unwell and what your body needs to feel better. The secret to this is to find a healthy balance.

I have learned (today in fact) that being late with your steroids is not OK and that thinking that I would be fine missing my 1pm tablet because I was busy with housework, would not have repercussions. I was wrong, I felt crap and even two hours after taking the steroids, still felt dreadful.

I have learned that pickle juice is the drink of the God’s and can take away muscle cramps and headaches better than any painkiller. I have also learned that low cortisol symptoms are very similar so it pays to be in tune with yourself to learn the difference – perhaps reach for the pickle juice first.

I have learned that no matter what you say to people, there will always be those that think you can be cured by herbs, raw food, coconut water and other things to heal your leaky gut or adrenal issues but that’s OK, I just sit there and watch them talking and imagine myself popping steroids into their mouth every time it opens while shouting ‘Goal!’ each time I get one in.

But the most important thing I have realised is that whilst I admit to enjoy being a bit of a rebel, sometimes you just have to work with what you have got and make the best of things including (in my case) the ‘new normal’ when it comes to your level of health.

Which reminds me, I have a snazzy looking case for my Solu-Cortef, a shelf in the fridge with jars of pickle juice on it to rival that of any beer fridge, plus steroids in every room and a remarkable ability to tell people where to stick their leaky gut and herbal cures.

Denial – it is not just a river in Egypt, get past it and life starts to look better, well it has for me anyway.

Looking forward to what 2017 may bring – me and my boys!

(Photograph by Sam Rose)

If you have adrenal insufficiency either newly diagnosed or still struggling to come to terms with it, I totally recommend joining a support group. The link below is the one I am a member of, but there are others as well so find one that you feel comfortable with.

Having just been recently diagnosed with steroid induced secondary adrenal insufficiency, I have been struggling to come to terms with the symptoms that come with the long name.

The doctor said he has no idea as to whether or not it is permanent but rather bluntly warned me how hard it is to wean off when you take the drug for your auto immune disease.

Not to mention having to balance the risk of flares from my connective tissue disease when trying to wean which will hinder the tapering off the drug. I will say that for me personally, Adrenal Insufficiency is harder to deal with than my auto immune disease and recently I have started to compare it to a banking system and before you think I am nuts, please read on and humor me.

The Bank of Adrenal Glands

I have my daily quota of hydrocortisone that I take at various intervals throughout the day and if I have a particularly bad/hard/strenuous day and don’t stress-dose; then I end up in deficit – to my adrenal glands.

By this I mean paying the price of muscle weakness, joint pains, confusion, exhaustion and dizziness to name but a few things. So when I take my hydrocortisone the next morning, I still feel like I ‘owe’ my body from the day before and can’t quite get on top of the steroid ‘debt’ and it takes me a while to catch up.

I went to Pilates yesterday which I found exceptionally difficult as I felt dizzy, had chest pains, weak muscles and it got to the point that I had to stress dose halfway through the class.

There I lay like a beached whale on the ground while everyone else was doing marvelous things with their legs and arms and I had to just do random movements because I could not keep up and looked as though I had restless arm/leg syndrome with the feeble movements that I struggled to do.

To make matters worse, this morning I had overslept through my alarm and was an hour late for my steroids. I was woken up by my husband telling me that I had overslept and was over an hour late with my drugs.

It was one of those moments where I woke up nauseous, very lightheaded, heavy arms and legs and felt so dizzy that I couldn’t get out of bed and had to fumble around my bedside cabinet for my steroids and then wait until they had decided to work.

I could almost hear my adrenals shouting ‘You are SO going to pay for this’ while personally assuring me that the rest of my body would be heavily involved in the assault.

Now I feel like I am ‘further in debt’ to my body and kind of owe it more hydrocortisone and like any other ‘lender’, the interest is mounting up on it as well.

That my friends is my ‘Bank of Hydrocortisone’ and it is a ruthless banker let me tell you and it knows no boundaries in terms of hounding you until you pay up.

Better go as I have a debt to pay in terms of 4mgs of steroids and my adrenal glands are waiting (impatiently).